Season 2

Bonus Episode: Alzheimer’s Association

Transcript

Hey Everyone!  

Welcome to a supplementary bonus episode of “The Problem.” These episodes let us drill down into specific examples of organizations or groups that are changing how life with Alzheimer’s can be lived.

I’m your host, Phil Lofton.

[Theme]

It’s hard to talk about Alzheimer’s disease and related policy without mentioning the Alzheimer’s Association.

Founded in 1980 by Jerome Sloan and several family support groups, the Alzheimer’s Association has been an invaluable resource for families living with Alzheimer’s.

It’s raised money for research through events like the walk to end Alzheimer’s, supplied resources to countless patients and caregivers, and raised overall awareness of the disease for nearly 40 years.

Nationally, the association now has 78 chapters. It has spun off a political impact arm, the Alzheimer’s Impact Movement, and it has helped raise the annual NIH funding for Alzheimer’s research to nearly $2 billion through successful lobbying.

To learn more about some of the policy advancements that we’ve seen in Indiana for Alzheimer’s, I spoke to Natalie Sutton, the chapter executive of the Indiana Chapter of the Alzheimer’s Association.

Natalie Sutton:
There are 5.8 million Americans living with Alzheimer’s disease now and about 16 million Americans who are providing unpaid care for someone with the disease in Indiana. That translates to about 110,000 Hoosiers who are living with the disease and about 338,000 Hoosier caregivers. So there’s already a big impact on people. Alzheimer’s disease is the most expensive disease in America as well. And that those numbers have the expense, don’t even calculate the value of the unpaid care that people are providing. So, uh, this disease unfortunately can really drain families and those affected.

Phil Lofton:
Why is Alzheimer’s the most expensive disease? What is it about Alzheimer’s disease that makes it so uniquely costly?

Natalie Sutton:
You know, unfortunately, I think a big driver of the cost is in the later stages of the disease and is in long-term care settings. So when we think about how much we spend, unfortunately we’re spending a lot of those funds toward the end of the disease spectrum. And at the Alzheimer’s Association, we think one thing that would be really great is to invest more in Alzheimer’s and dementia as a public health issue and focus more on how we can improve diagnosis and help people to live better in their homes and communities with the disease. We think that that would help to reduce the cost of the disease for sure.

Phil Lofton:
So how are we going to see this trend of Alzheimer’s prevalence, Alzheimer’s incidence, and caregiver population? How are we gonna see the cost increase over the next several decades?

Natalie Sutton:
We’re very ambitious at the Alzheimer’s Association, so we set big goals and we hold ourselves to the highest standards in terms of trying to achieve those goals. We were founded as an organization with really two aims: one, to advance research, to put an end to the disease, but at the same time, recognizing that research takes time and people are hurting now, providing care and support for those living with the disease. So when we boil those really big planks of our mission down to our local community in our local chapter of the association, we have six pillars of our strategic plan. One that we spend a lot of time on every day is care and support for those affected. Our big goal there is really to reach more people. So we reach just under about 6,000 unduplicated constituents in Indiana year, which sounds like a lot at first, but when you realize that 110,000 Hoosiers are living with this disease, we know we’re not doing enough.

Phil Lofton:
Those Hoosiers, though, have unique opportunities, Natalie says, due to local resources and opportunities in research.

Natalie Sutton:
Indiana is a great place to be for Alzheimer’s research right now, and I think there are a lot of exciting things happening at the Indiana University School of Medicine, but also in our life sciences industry in Indiana and in the pharmaceutical industry. So, there is a lot of great research work happening. One of the things we’re most excited about that our chapter has become very involved with is the longitudinal early-onset Alzheimer’s disease study.

So really, you know, a long-term observational study that we’ll look at people who have been diagnosed with Alzheimer’s or dementia prior to the age of 65. And I think it’s really interesting to think about what we can learn from those patients without all of the complications of aging that we see in a more traditional onset of the disease, as well as the fact that families affected by early onset disease are experiencing this challenge at a different time in their lives, when they’re supposed to be still putting their kids through college or working actively.

And so it’s an especially devastating form of the disease and we’ve been very excited at the greater Indiana chapter to get involved with that study and support some of the genetic analysis that was not going to be funded by the NIH.

Phil Lofton:
We’ll learn more later this season about that study.

The Alzheimer’s association has also had political impact over the last several decades. I spoke with Jason Barrett, the policy director of the Greater Indiana chapter, to learn more. 

Jason Barrett:
So part of my role with the association is to work at the federal and the state level to help promote the adoption of policies that are providing caregiver support and increasing the care and support for those living with the disease — increasing research funding. So, just quickly, federally we’ve had a lot of very large successes advocating at the federal level. About a decade ago, we were instrumental in helping to pass the bill that created the first ever national plan to address Alzheimer’s disease. Goal one of that plan was to have a medical intervention in place by the year 2025. And we’ve used that goal as well as a few other things to help us with advocating for additional research funding for Alzheimer’s disease.

We’ve been hugely successful on this front. We’ve been able to quintuple — that’s five times — the amount of NIH funding over the past six years. So about six years ago, we were at $450 million a year. We’re currently at 2.3 billion a year and that number is likely — hopefully, fingers crossed — to increase further with the budget being passed later this year, the fiscal budget. Now we’re working with Congress and we have some pretty good first indicators that that money is going to be increased even more. So federally speaking, we have a lot of successes. And one bill that we passed last year was our priority bill that plays very well into what we’re trying to do at the state level as well.  

That bill, it was called the Building Our Largest Dementia, or BOLD, Infrastructure for Alzheimer’s Act. And it will, or once it’s funded properly, it will create Alzheimer’s centers of excellence across the country where these places can be designated as an Alzheimer’s center of excellence. And they’ll receive funding from CDC to promote awareness of the disease, provide caregiver support, help with that early detection and diagnosis, which is key for caregiver support and making sure that medical plans are in place and also collecting data that can help to promote further policies. So these are some of the things that we’ve been very successful at at the federal level.

Phil Lofton:
If you’re in need in Central Indiana, there are plenty of resources offered by the Alzheimer’s Association, both for patients and caregivers.

Natalie Sutton:
The greater Indiana chapter runs 65 support groups throughout the state. We really want people to know that they’re not alone, right? This is a big issue, but it’s also affecting a lot of families and there’s power in coming together, especially for those caregivers to talk about what they’re experiencing. And to provide that mutual support for each other.

We have a 24/7 helpline at the Alzheimer’s Association, an incredible resource, because it’s available 24/7. The issues and challenges of this disease don’t neatly present themselves during business hours. So giving caregivers, what really some of them have called a lifeline, being able to call, you know, at two in the morning or over the holidays when you’re a caregiver, experiencing a challenge and have that compassionate ear as well as gain information and sometimes some tools or strategies that may help you through a challenging situation. So those are just a couple of examples of the care and support services that we are really happy to provide for Hoosiers.

Phil Lofton:
Join us next week for our regular episode, where we’ll learn about a clinical model that can improve quality of life and health for both caregivers and patients by putting team-based care at the forefront, all while reducing costs for the healthcare system.

Music for this episode was from Everlone and Broke for Free. Our theme, and additional musical cues were written and performed, as always, by Fungus Amongus  

The Problem is produced at studio 134 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at regenstrief.org/theproblem.

The Problem is written, hosted, edited and produced by me, Phil Lofton, with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and social media marketing is by Jen Walker.

Bonus Materials

Learn more about the Alzheimer’s Association, as well as the resources they offer caregivers and patients, and discover more facts about Alzheimer’s at https://alz.org/

Learn more about Alzheimer’s advocacy and public policy at https://alzimpact.org/

 

Season 2, Episode 2: Alzheimer’s in Our Communities: Fitness, Friends, and Policy

Transcript

Mindi Winnie

So, I finished out my freshman year of college and at the time I was working at my favorite little restaurant in my home town, called Turkeyville, USA. And you wouldn’t believe it but all they serve is turkey, but turkey of every form so you got turkey taco. Oh my gosh, they would be so stoked if they heard something like this. It’s got a dinner theater. And I think that’s really where I started to fall in love with older adults because I served them.

But I think my mom had brought my aunt and my sister out, and my grandma out to visit me while I was working one day at Turkeyville. And they went shopping around in the gift shop and my grandma spotted this – okay, it was, it’s not a Beanie Baby, but it was one of those TY animals where they’ve got the big eyes – so at first my mom kind of had a hard time like, allowing her to get the stuffed animal or play with it, because again, here she is wheeling around this older lady who’s just googoo-gaga over this little stuffed animal unicorn.

But then my mom just, you know, saw the joy in her eyes and was just like, I gotta get it for her. I just have two of most beautiful pictures of her with the baby. It’s like I none of us had seen that smile on her face and years.

 

Phil Lofton

Imagine you want to go to the store. Maybe you need something small. For most of us, it’s simple. We grab our keys, get in the car, we drive to the store. You walk in, grab the new tube of toothpaste, or what have you, you pay, and you drive home, and that’s that.

We know where to turn, we know the landmarks, the stores and signs along the way. We know where to find the toothpaste. We know how to use the credit card reader or count our cash, and we know a thousand other steps along the way that are all a critical part of the mission. 

Life with Alzheimer’s is different. Any one of those steps along the way can become immensely difficult or impossible once Alzheimer’s and dementia are in the mix, and often, city planners don’t design our infrastructure, our services or our policies in a way that takes this into account. And even if we did, there’s a stigma that follows individuals with Alzheimer’s in our communities that can be difficult to erase.

In this episode, we’ll look at how cities and communities are structured in a way that can – unintentionally – be difficult, and sometimes even harmful to those with Alzheimer’s and dementia. We’ll also hear from scientists and community leaders about ways we can make a difference.

Welcome to The Problem. I’m your host, Phil Lofton.

[THEME]

Think about how your hometown looked when you were a child.

The way buildings looked, the familiar sights, the places you used to spend time as a kid, the landmarks that helped you find your way.

As time passes, those landmarks, those familiarities change. And that’s not the worst thing! Cities grow, new tenants take over old buildings, it’s progress. 

But for older adults with Alzheimer’s disease and dementia, the changing face of their city can lead to difficulty navigating day to day life, or even confusion or wandering.

According to the Alzheimer’s Association, 70% of individuals who are living with Alzheimer’s live in the community setting – which is to say that they live in their home. A quarter of those individuals live alone.

But even if those individuals live with family who can help them navigate the environment, there can still be challenges.

I spoke with Regenstrief Scientist NiCole Keith about these challenges. When it comes to fitness and getting communities more engaged in health, she’s a top expert. She’s the Associate Dean of Faculty Affairs, Indiana University School of Health & Human Sciences, the Vice President of the National Physical Activity Plan Alliance, and the President-Elect of the American College of Sports Medicine. Over the last fifteen years, her PARCS program has helped thousands of Hoosiers become more active. 

 

 

NiCole Keith

So, it really depends on the level of cognitive impairment. There are some older adults who just should not be out without a caregiver. But I said “without a caregiver” because it’s important for everyone, regardless of cognitive status to be physically active. For those people who have mild cognitive impairment or early stages of dementia and are still out and about, uh, keeping the environment familiar is really important. And so, as buildings are going up that used to not be there, um, it could be really disorienting, or if the street configuration changes, it could be very disorienting to somebody who has been living in the same place for years. And so really making the signs so that they’re easily easy to read, um, that they’re obvious so that people know who they are, where they are and where they’re going and that places can remain familiar.

Phil Lofton
Does lighting and pavement evenness, like, play an even bigger role in those issues?

 NiCole Keith

Yeah, it’s really important. And so having adequate streetlights, um, having, um, a barrier between the traffic and the pedestrian, um, path is also really important. And so keeping those in mind, but also, you know, the levelness of the sidewalk because even for people who, um, are, have, their cognitive function is completely intact, there might be a problem with vision or balance, and if the sidewalks are in disrepair, they may not notice it and that’s a falling or a tripping hazard.

 

Phil Lofton

And of course, there are kind people out there who might go out of their way to help navigate for those who are lost.

But there’s a stigma that can follow people with Alzheimer’s disease and dementia. It can show up in all sorts of unexpected interactions – a sideways look from a server, an impatient response from a cashier – and it’s often rooted in a lack of understanding about Alzheimer’s and dementia, and the difficulties that they can bring to patients’ lives. 

What’s more, patients and caregivers can internalize this stigma, which can lead to isolation.

Here’s Dan Bateman, a psychiatrist from Regenstrief who specializes in senior health, on innovative environmental cues for seniors, and how small, positive interactions can make a difference in improving seniors’ interactions with their space. 

 

Dan Bateman

I think having an awareness is probably the biggest thing. Um, I think other community programs that can identify the person who has dementia but not in a stigmatizing way. For example, there’s an Alzheimer’s Association program that has a wristband. It’s not a GPS device or anything like that, but it’s more of a jewelry. Like you would have an emergency [bracelet], if you had a cardiac condition, you would wear similar bracelet, right? But for the heart condition, this registers the person with emergency services in Indianapolis, in surrounding counties, and also registers them nationally. So if this person gets lost, and someone notices this thing, this bracelet on their arm and they see this confused person, then they could then realize the person has Alzheimer’s disease, call the phone number and then the person’s located.

 There’s other techniques to help people with Alzheimer’s disease stay safe. I think other things that that can be helpful is, you know, I’ve seen some really ingenious things from patients themselves. One of my patients has her own business card that describes her name and a favorite Bible verse, but also describes her illness a little bit in terms of what she has so that there’s no judgment there. And so that, you know, at a restaurant she might hand this card out and then the waiter or waitress knows that, um, that this is the condition that she has. So if she asks for ketchup five times, and hopefully it’s a good waitress and it’s not that she’s having to ask five times about that delivery, but that they’ll understand what’s going on.

  

Phil Lofton

In Indiana, there’s an initiative underway, being led by Dementia Friends Indiana, that could lead to a better understanding – across industries – of what Alzheimer’s is, and how to create more welcoming spaces for those who live with it.

I spoke with Dustin Ziegler, of CICOA, Central Indiana’s Area Agency on Aging, and Dementia Friends, to learn more about the program.

 

Dustin Ziegler
So Dementia Friends Indiana is this rapidly growing movement that we’re so proud of and so excited about. It’s about two years old. We started this in August, 2017. In doing so when we adopted it and CICOA became the state administrator for the program, it made Indiana at the time, the 10th state in the United States to adopt a statewide plan for a dementia friendly state. You flash forward those two years, we have come just light years ahead with the movement and the things that we’ve been able to do with it. And to me, I think that’s a reflection of how overdue it is and how much people have been wanting and needing something like this to come around. And really at the end of the day it’s a social movement, to increase that awareness and education about the condition, reduce the stigma, and make our communities more conducive and welcoming for those who are living with it.

 

 

Phil Lofton

People who participate in dementia friends attend a brief in-person session, or watch an online video session.

They participate in exercises that help them better understand the difficulties of life with dementia.

In one exercise, participants list every step of a seemingly simple activity, such as brushing their teeth, to emphasize the numerous steps involved in even the most basic tasks.

But the initiative is about more than just understanding the impact dementia has on tasks. 

 

Phil Lofton
So what makes dementia friends so powerful? Why is it the model that you all have chosen to push in this state?

Dustin Ziegler

We think it’s just a whole new approach. Dementia has been identified as the most feared disease in our country, it surpassed cancer a while ago. And that’s not just for older adults. That’s people surveyed of all ages. They fear it more than anything else. And they fear it because of the stigma, because they don’t understand the condition and they have these perceptions about it. Dementia, friends, Indiana basically looks to disrupt all that and bring the facts to the table about what this, what this disease is and the realistic components of, yeah, you may have it, but there’s still a lot of good life to live. You’re still a person who can engage and contribute in our communities. And you’re absolutely not alone, it’s the most prevalent condition, it’s only getting bigger and bigger. And so we look to at Dementia Friends Indiana, to bring a positive, optimistic spin on the condition.

And that’s not to downplay the effects of it because it’s bad. It’s a dreadful disease. But that doesn’t mean that life is over. And there’s a lot we can do to accommodate and to be more welcoming and conducive for those who are experiencing it. And the more we talk about it and the more we show these examples of these great stories about how people continue to remain engaged in their communities and enjoying life, sometimes more than ever with the condition, that gives people, not just hope, but a tangible example that, okay, yeah, they have dementia, but who cares? It’s a brain condition. They have, they have a, a disease just like I have hypertension or diabetes. We don’t define somebody by their disease in those cases. So why would we define them in this case too? And because of the prevalence and the impact that the condition is having that just brings, has brought a lot of optimism and relief to our communities. We’ve never seen a condition or a movement rally our communities like we’ve seen with this. And I think that’s a reflection of just how many people are affected by it.

Phil Lofton

I want to talk a little bit about like what actually makes dementia friends, dementia friends, because dementia friends is not “come to this two hour seminar and then you will do these eight things in all interactions with all people with dementia and that will somehow make this better”, right? It’s a little bit different from that. What exactly is it?

Dustin Ziegler
So it’s coming back to a philosophy really I would say. At the end of the day it really comes down to two things. The first thing is just education and understanding about what the condition is. And a second part is to take action to create awareness and do something about it so that more people are educated about it, steps are taken to reduce the stigma and more people are connected to the movement. That’s really the core of it. And so when you become a dementia friend, that’s the beginning. You don’t just go to an info session. “I became a dementia friend and now I’m done”. Now what are you going to do about it? And that’s really important, uh, because, because it is a social movement, even if you are somebody who is really, um, familiar with the condition or you’re an expert in the field, um, that it still means that you’re committing that I’m going to do something about it to get more people online level and, and to, and to make a difference.

Phil Lofton
So the way that a dementia friends lifestyle can be sort of led by a waitress is different from the way that a banker might lead. It is different from the way that a first responder would lead it, but it’s about creating a whole community of people that have a better understanding of the disease and then go out, take action to keep people feeling included, to not stigmatize people through their actions, through their businesses, what have you.

Dustin Ziegler

Yeah, you nailed it. Nice. Yeah. I mean, that’s the foundation for it. So, you know, what does a banker have in common with a first responder, with a museum professional, with a teacher, you know, et cetera, et cetera? What we all have in common is that this disease affects every single community sector. And so, a banker may not take the same approach as a first responder, but the idea is the foundation of understanding and the welcomeness of the condition. You apply that to whatever your specialty is and, you can change somebody’s life with it and make it more welcoming and conducive. There’s examples in every industry that you can apply. And, and again, it’s, it’s not necessarily like you have to spend $1 million to do it. For example, if a restaurant just took certain steps to maybe create an area in the restaurant that’s a little quieter, maybe closer to the restrooms, maybe they have a process that if they know somebody with dementia is in that party, that they provide a simpler menu, that they have like a waiter or waitress who has the education and understanding of the condition to be patient and how to communicate those things alone.

They don’t cost very much if anything, but it’s could make the whole difference with the experience with somebody who now if I moved my loved one, I can say, you know what, I can still go out to my restaurant. All I wanted to have is a good experience and a good meal. My loved one and I can continue to do that just because of these little, um, basic modifications and, and just different ways of thinking in our communities.

Phil Lofton
It reminds me a lot of what I’ve heard from my friends who are parents of children with sensory issues.

Mindi Winnie

Yep. This is not specific to dementia or you know, Alzheimer’s disease, other related dementias. I mean, this applies to nearly everything.

Phil Lofton

And when you as a business start to say, “Hey, how can we include this population right?” Then you are cued into this population whose point of care is not that different.

 

Phil Lofton

In the very near future, thanks to the joint efforts of Dementia Friends Indiana and the Indiana Family and Social Services Administration, all first responders in the state of Indiana will be trained as dementia friends. That’s a huge step forward for several reasons.

Imagine a police officer responding to a shoplifting call at a convenience store. They show up to the store, and find an older person who, according to the store’s owner, was trying to walk out with unpaid merchandise.

The older person is agitated. Understandably! They’re confused – maybe they don’t even remember grabbing the merchandise in the first place – and they’re being told they’re in trouble by a police officer and someone they’ve likely never met.

And there’s most definitely a right way and a wrong way to deal with the situation. There’s a way to de-escalate. There’s a way to interact with the “perpetrator” in such a way that you can get them in touch with a loved one and get them home safely.

There are other powerful examples to be found of ways the dementia friends philosophy can benefit a variety of first-response scenarios.

These large-scale wins, though, aren’t possible without the efforts of area agencies on aging, like CICOA, state agencies such as the Indiana Family and Social Services, which helped make the expansion of dementia friends possible, and nonprofits such as the Alzheimer’s association. I spoke with Jason Barrett, policy director of the Indiana Chapter of the Alzheimer’s Association about some of their policy goals.

 

Jason Barrett

Our Association the Alzheimer’s Association, collaborates with the CDC to form what’s called the Healthy Brain Initiative and the Healthy Brain Initiative they put out what’s called the public health roadmap. And this is a roadmap, the last one was released last fall, and it’s a roadmap of identifying how Alzheimer’s disease is a public health crisis and what state and local health departments can do to address this public health crisis and a list 25 actions that states can take states and localities can take.

So our association is working with our state government to try to find ways to implement these actions as thoroughly as possible. And they focus on raising awareness of the disease and education with the general public as well as those in the health care profession, making sure that our dementia care workforce is adequately trained, forming partnerships. And then also monitoring and evaluating policies that exist and gathering data to help identify what we can do moving forward what the prevalence of this disease looks like moving forward.

So, this is something that we’re really happy to see come through. We’re excited about taking these steps. And so we’re working with the state agencies who are focused on Alzheimer’s dementia care to make sure they understand the impact of these actions and how we can properly implement and evaluate these actions over time.

If you or anyone you know, has any questions about Alzheimer’s disease, if you’re a caregiver and you need some support, whatever it may be, we have 100% free resources you can reach out to our chapter or a chapter that’s maybe closer to you if Indianapolis or the Indiana chapter, if you live in a state border, we have a 1-800 number that you can call 24 7, that helpline, they are trained staff. So anytime you have any need any question whatsoever, it’s 100%. free resource. And what I do personally with the association is public policy.

We are a volunteer based organization. So with our support groups and education seminars and walk committees, just like those are public policy approaches for advocacy or volunteer focus. So we build a team of volunteers that we take out with us when we meet with our federal members of Congress, with our state members of Congress when we host events centered around policy, and if somebody wants to get involved, they can go to our chapters website, www.alz.org Indiana or if you want to be more specifically focused on advocacy, you can go to alz impact that’s www.alzinpact.org. And you can learn more about our advocacy programs and even register to be a volunteer advocate right there.

 

Phil Lofton

If you’d like to learn more about the work being done by the Alzheimer’s Association, listen to our special case study episode, available now, featuring longer excerpts from my conversation with Jason, as well as the Chapter Executive, Natalie Sutton.

Creating better, more understanding public spaces for patients with Alzheimer’s disease and dementia is a good foundational movement to improve lives.

In our next episode, you’ll hear about an innovative, multi-disciplinary model of care that’s helping improve the quality of life for both patients and caregivers here in central Indiana, all while reducing costs for systems.

Join us then, on The Problem.

Music for this episode was from Everlone and Broke for Free. Our theme, and additional musical cues were written and performed, as always, by Young Elderz.

The Problem is produced at studio 134 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at Regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at Regenstrief.org theproblem.

The Problem is written, hosted, edited and produced by me, Phil Lofton, with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and social media marketing is by Jen Walker.

Special thanks to Mindi Winnie, our storyteller this season.

Bonus Material

Listen to a presentation from Dustin Ziegler to the Regenstrief Institute for more on Dementia Friends:

Mindi’s grandma with her stuffed unicorn:

Mindi's grandma with her stuffed unicorn

Season 2, Episode 1: Plaques and Tangles

Transcript

From the Regenstrief Institute, this is The Problem.

The Problem is an anthological podcast dedicated to fighting the hydras of healthcare, those complicated, big, hairy issues that impact health on the societal level.

Every season you’ll hear about a different significant problem, and each episode within that season will feature a different discipline or industry’s take on that problem — how it’s being addressed, how it’s being talked about, and the trials and triumphs of those
involved clinically and personally.

You don’t need a PhD to be affected by these issues, so you shouldn’t need a PhD to learn more about them. Regenstrief Institute is a global leader dedicated to improving health and healthcare through innovations and research in biomedical informatics, health services, and aging.

Welcome to The Problem.

Phil Lofton:
What’s your first memory of your grandma?

Mindi Winnie:
I mean, I think the thing that’s just most, I don’t know… present in my mind is just my grandmother being at everything. Like, she was my ride to dance classes. She brought me food every single day at dance class. I had my grandparents and especially my grandmother all to myself. So we just had such a unique bond. So I think for me, it was just her being present at everything.

I graduated from college in August of 2009. Excuse me, May of 2013. And then by August of 2013, my grandma had passed away. But at that point, I mean, at the time of my graduation, she was not able to be there. You know, of course, any graduation ceremony is long, but a college graduation…

Near the end, she would just sit in the family room, and then she’d get up and then she’d walk around the house and then she’d sit down for a minute and then start again. I mean, it was just constant pacing and wandering. And so, I mean, there was just no, no way she could have been there. But you know, if she would have been aware that she was missing my college graduation, it would have just killed her.  

Phil Lofton:
The story of cognitive illness goes back quite a long way. The concept of cognitive illness is ancient. For centuries, humans have associated advanced age with mental decline.

But in many ways, the story of this season’s problem really begins in the 19th century with a Bavarian medical student named Alois. (Editor’s Note: Multiple sources informed this segment; however, I highly recommend reading Cipriani’s offering on the topic, linked at the end of this portion). Alois, a charismatic young man, and a fencer, was drawn to diseases of the brain.

After he graduated from medical school in Wurzburg, Germany, Alois left to Frankfurt, to begin his career in the city’s asylum. Emil Kraepelin, a famed psychiatrist in the region, took note of Alois’ abilities, and decided to mentor the young doctor.

Over the next few years, the two worked together on a variety of cases involving senility in older patients, including a posthumous examination of the brain of one of Alois’ patients, Auguste Dieter.

Frau Dieter had shown a loss of short-term memory and symptoms beyond those of his usual patients, including hallucinations, disruptive behaviors, and delusions. Alois became fascinated with determining what had caused her decline.

In the course of his work in Kraepelin’s lab, Alois discovered something unique about Frau Dieter’s brain, two physiological symptoms that would come to define her disease: amyloid plaques and neurofibrillary tangles, both of which disrupt the brain’s function.

Alois published a paper on his findings, calling Frau Dieter’s condition presenile
dementia
, though another name for her condition would emerge three years
later in a paper from Kraepelin.

He would name the disease — a disease that now affects nearly 6 million Americans and their 16 million caregivers — after the surname of his mentee, Alois.

Alzheimer’s disease.

Welcome back to a new season of The Problem. I’m your host, Phil Lofton.

[THEME]

Alzheimer’s disease has, over the course of the last several decades, become a major focus of discussion on healthcare. But what, exactly, makes Alzheimer’s unique from other related diseases like dementia?

Here’s Dr. Chris Callahan, a Regenstrief scientist, the former and founding director of the IU Center for Aging Research at Regenstrief, professor of medicine at the Indiana University School of Medicine, and Chief Research and Development Officer for Eskenazi Health.

Chris Callahan:
A good way to think about this is that dementia is a very broad category, like we have trees, but we have many different kinds of trees. So you could accurately call a tree a tree, but you could also call it an oak tree or an elm tree. And so there are different types of dementia. Dementia means that you’ve had a fall in your cognitive functioning that’s severe enough to interfere with your social functioning. So people sometimes will be concerned that they can’t find their keys or their glasses or they forget somebody in a social context, but those kinds of things happen to us all the time.

When we get older, we get more concerned that it might be evidence of dementia. But we’re talking about impairments in your memory or other parts of your brain function that impair your ability to take care of yourself and do the kind of social roles that
you’ve always done. So Alzheimer’s disease tends to present initially as difficulty with short term memory. That’s the hallmark of it. But even that by itself isn’t enough to label it Alzheimer’s disease. You need to have impairment in other areas like your ability to plan or your ability to control things in a visual spatial context. Your ability to use language and recall words or name objects, and then also, we sometimes have concerns with folks’ judgment and reason.

Depending on which of those areas are impaired first and the most, that helps us decide what type of dementia that person might have. Now, having said that, when you reach an older age, say 75 and older and you develop dementia, it’s most likely going to be Alzheimer’s disease is at least part of the explanation. But it also happens that we have mixed dementia very commonly too, so you might have a vascular dementia due to poor circulation in your brain. And that’s mixed with an Alzheimer’s disease or an Alzheimer’s disease mixed with any other kind of dementia. So that is common for you to have more than one pathology in your brain.

Phil Lofton:
And that’s where we get the phrase Alzheimer’s disease and related dementia from?

Chris Callahan:
That’s exactly right.

Phil Lofton:
With the aging baby boomer generation now almost entirely entered into retirement, the prevalence of Alzheimer’s disease is only going to continue to increase.

In fact, scientists are now estimating that by 2050, there will be more than 14 million Americans living with Alzheimer’s disease and there will likely be 42 million Americans providing unpaid care to these patients.

Alzheimer’s affects every aspect of a person’s life, as well as the lives of those who provide them care, and those in their community.

The search for a cure has been unsuccessful, but even if scientists were to find one today, there would still be millions of families needing support as they navigate life with cognitive decline.

It’s an issue of policy and pharmacy, infrastructure and informatics, medicine and marketing.

It’s an issue that, more and more, will become one of the biggest health challenges of our time.

This season, we’ll be looking at Alzheimer’s disease and related dementia. Through discussions with scientists, policy makers, and those most affected by the disease, The Problem will explore the impact that Alzheimer’s has on the lives of patients and caregivers, where the current research stands, and ways you might be able to reduce your risks.

The season will start with a short arc of four episodes on life with Alzheimer’s, focusing on the community perspective, the health systems perspective, the caregiver, and finally, the patient. After that, there will be one episode on screening and diagnosis for
Alzheimer’s, ways to reduce your risks — diet and exercise, pharmaceuticals that might cause cognitive decline, and an episode on some possible causes of Alzheimer’s and dementia that might surprise you.

As you might imagine, it’s hard to talk about societal-level changes to diet and exercise behaviors without talking about public policy, just like how it’s difficult to talk about the
effect of pharmaceuticals on cognitive health without talking about the way that health systems operate and how medications are prescribed in the first place.

While there isn’t yet a cure, thanks to the work of countless specialists, volunteers, lobbyists, friends, families and patients with Alzheimer’s, we in research and healthcare have learned so much about ways to improve the lives of those living with this condition, and many are hard at work to learn even more.

Join us next time, as we discuss how to make beneficial policies and communities that are safer for individuals with Alzheimer’s, on The Problem.

Music for this episode was from Everlone and Broke for Free. Our theme, and additional musical cues were written and performed, as always, by Bert Flooterman.

The Problem is produced at studio 134 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at regenstrief.org, and see bonus content from this episode, including sources, pictures and more, at regenstrief.org theproblem.

The Problem is written, hosted, edited and produced by me, Phil Lofton, with additional editing by Andi Anibal, John Erickson, and Jen Walker. Web design and graphics are by Andi Anibal, and social media marketing is by Jen Walker.